Life as Magical Moyamoya

Jun. 3rd, 2016 | 12:01 pm

Jun. 2nd, 2016 | 02:03 pm

Here to tell you that I am still very much a Queen in my own right. This time around though it's not for being bitchy, miserable, pessimistic and many other sad but all to true ugly qualitites in my life once upon a time.

Yesterday I was "giving up" on pretty much everything except my life. For that is one thing we'll never have to worry about my luv muffins, I'm not at all the least bit suicidal. Can't tell you I wasn't, once upon a time, but now there are NO worries there either.

Nope, one thing I have learned is to stay calm in situations. Which leads me to my second todaysm. I am still just utterly exhausted from our cook out on Sunday. Y'all so called normal peeps get tired from every day living. Well I can tell you from my one personal experience that every day living can wipe my energy right the hell out of six parks.

It can take DAYS for me to recover from that. Monday I can't begin to tell y'all how long I was actually awake and out of bed. Tuesday I was still pretty damn tired and it was hard to stay awake to watch my lil dude. Nap time was a blessing and thankfully he knows that Mam Mam always wins.

Yesterday I could mainly function. I did get some stuff accomplished around the house and even in the yard a wee bit.

Today though, I am doing much of nothing until I damn well fucking feel like and I will not even begin to apologize for it. Think of me what you wish for admitting to being as lazy as I can today. For what y'all think of me no longer really matters to me.

Not saying that your love, support, encouragement, kind words and hell even the not so unkind ones over the years is just one of the things that keep me going. I'm not a quitter y'all.

Sometimes I just have to randomly spurt out the negative so that I don't try to reconnect the "dwell on it pessimism" route in my brain. That is one bridge I prefer not to repair.

Anywho I'm sure there was a moral to this tale, but right now I can't rightly think of it. Y'all have the most blessed of days that you can. For now I am going to kick back and continue to enjoy this view

May. 21st, 2016 | 12:01 pm

May. 20th, 2016 | 05:09 pm

In full bitch mode. Why? I really don't like to and to be quite honest I wasn't all that thrilled about it for as long as I did so. It's exhausting now plus life is to damned short to waste time on it.

Which is why I'm blogging instead of mowing the lawn. Ah well, let's focus on me and some numbers from the last year. You're thrilled, I know hehehe

We've been back in the Mitten for a year now, give or take a few days. It still pretty much sucks in some aspects but that is all parts of life no matter where we are. So I deal as it's not gonna be a permanent place.

Since last year though when I was able to get back in with my awesome health care team I have been able to get a few things back on track.

Wish I could say my weight is one, but I still tip in around 200 pounds, give or take a few depending on the time of day. Once upon a time that would have depressed me to no end. Not anymore. For that number while I'd like to see it go lower, does see me doing the following:

I've dropped somewhere between four to six pant sizes. Pairs I bought last year at this time are now to big. Other pants given to me since here are also getting looser. Biggest bonus, I am on the last notch of my current belt. I am confident that by summers end I'll need a brand new belt.

Sadly I lack any hip or ass definition and as I don't feel like mooning everyone, I still need a belt as I lose weight.

Other huge change is I was able to drop my a1c level to a little over 6 and we started close to 9. For those who are unaware, a1c is a diabetes term. I am still a type 2 but my goal is to kick its ass yet again. I've seen me do it.

Thankfully as I am doing so good health wise, I am able to see my doctors every six months. I will of course seek medical attention if it's needed. I know me well enough by now to know what is just not right.

ugh, I've been tripped up by my lack of energizing sleep lately and my thought train is way the fuck off some where else.

May. 17th, 2016 | 12:01 pm

May. 16th, 2016 | 02:52 pm

When it's learned that I've had a stroke peeps are curious as to what it felt like. Honestly it doesn't bother me to get asked, I don't find it offensive or rude. We're all curious about things and are likely just embarrassed to admit it.

Not me.

Hi Y'all

I'm here to tell y'all that it's weird having a stroke. I can only speak for me and the trees. The best way I can tell you to imagine it though is to take a marker, start at the top of your head and perfectly divide your body in half. Pick a side to quit functioning with NO slow down period really.

For me it was really quick. The first TIA were resolved by the time we got to an E.R. and due to my history of migraines it was also misdiagnosed at that time as a "migraine equivalent."

Of course being the hard headed lil sprite I am when the full on stroke hit, I didn't take some symptoms seriously at all. Nope my darlings, it wasn't until my entire left side quit working and how I didn't break a glass panel door on my way to the floor, I'll never know. OF course no one else heard this and it was then where time is not on your side and if I recall somewhere in the neighborhood of 1-3 am-ish.

Before I continue my story, time is of the essence if you are having a stroke. There is medical treatment that can be done in the first 3 hours and what a great question to ask if that pertains to someone like me.

Hmmm, different tangent, at another time.

It was no dream as I was still fully awake, aware and knew my surroundings. I truly thought I was screaming for help and found out later still no one had heard me in a teeny house. No clue how long it took me to get off the floor and on to a couch by the front door. All through this time I remember telling my body to work damn you.

All to no avail. Once I was able to stand back up I knew I could make a bee line for my bedroom and if I could just make past the living room wall it would be super smooth sailing as I could lean on the wall to my right pretty much all the way to bed. Which I did; and did not awaken the sleeping ex next to me for it wasn't anything to worry about.

Yup, peeps ya read it right. Can't promise he wont' be mentioned more as he was about one of the only peeps who stuck by my side from the time I was discharged from the eventual trip to the ER we made in my tale above and was absolved of all duties when we did our Military tour 2012-2015. At times we had sex in those times, can't blame a girl for gettin it.

Back to me though. I think what made it hard for mine to be taken seriously by the medical place we went to is that I looked mostly so damn normal. Yes I had the facial droop, for less than 24 hours. I could tell you where I was, what year, etc....

These are all of course not your usual reaction. Any one who had known me long enough is I hope remembering with fondness that I always did things my own way. Not necessarily always the best but that was then.

I do not recall what time we finally made it to the ER and only thing I can really reference to time is that I was able to get a kids meal from across the street. I had no issues swallowing and believe me LOTS of tests were done before I was cleared to eat.

Yet another typical issue with strokes is the inability to swallow. There's a technical term I'm sure. Speech can be affected as well and my issues with them weren't considered important for a while.

Oh well, yet another case of that was then and well this is the here and now. I've come a long way since that way to kick off 2008 and it's still just not any easier to describe.

It feels weird. Wasn't the least bit painful and I guess more surreal feeling. I don't know. I am blessed, grateful and thankful though for the experience as it's allowed me to be the person I wanted to be.

Best part is I am still learning just who that is and maybe I'll never fully know. What I do know is I have a part time job that suits my life now. I'm a grandma to the best lil dude ever and all said, life couldn't be better.

Anywho y'all I need to call this one an episode and take advantage of the fact that said lil dude is still out with momma and I can get some more cleaning done. Starting with emptying the dishwasher before he does, ugh

May. 2nd, 2016 | 12:02 pm

May. 1st, 2016 | 02:00 pm

Quite honestly my freaky darlins, it just does NOT feel like eight years have passed since I started this Stroke Awareness series during the month of May.

If you're new to the My Moyamoya Madhouse eight years ago I had a stroke. One and a half years after that it the cause was found. I have Moyamoya disease, which we'll cover in a few days. It's rare, with no current cure, no pharmaceutical treatment and pretty much your only option is brain surgery, IF you're lucky enough to catch it.

I had two series in before that and I still continue to my best to educate about the warning signs of a stroke. It's important knowledge for if it's caught in time there are options that can help prevent damages that lead to disability or death.

Do I care if you stay for the month long event? Nope you can't break my heart for it has a hole it in already! We'll talk about that sometime also. First day is mostly just this, me rambling random thoughts and eventually I'll toss out the acronym I like second best in the whole wide world.

F This is simple, if someone pretty much instantly looks like a melted wax figure, call 911 or get to an Emergency Room, NOW! Yes there are other non emergency things that can cause the facial drooping. Take it from me personally, it's better to be safe than sorry.

A Arms are fairly easy also. Have the person raise their arms in front of you. If they can't hold them even or even really raise them, call 911, etc..

S Speech is another one. If you're not playing a game of stuffing marshmallows in the pie hole to say "Fluffy Bunny" and someone with you sounds like that and they're not pranking ya, once again dial 911, etc...

One of those signs is bad enough, two isn't cool either and if you're like me with the trifecta of warning signs our last letter could make a HUGE difference.

T Time is now your enemy, for every minute gone means brain cells are dead. IF you can, try to note the time that said incidents occurred for the Emergency Personnel. Explain to the 911 operator that you believe a stroke is occurring so that the CORRECT type of EMS vehicle can be sent.

Do NOT let anyone blow you off if a stroke is suspected. I really do not wish any type of brain cell death upon even those I loathe a great deal, depending on the day.

For I am not the person who started blogging close to 11 years now. She passed in 2008, January 26th or 28th as other dates are now at the forefront of my memory. The person I am now has residual parts of that person but the rest is all brand new and still learning.

I am truly blessed by the Lords and Ladies to be telling you of my adventure in to a damn disease that really needs to be what a shot at the local haunt is called and not same rare thing almost everyone thinks is melanoma when I say it.

Nope folks, skin cancer likely would have been far easier to deal with for it's a known face in the medical roulette wheel of suckiness. Can't say that I've always enjoyed the spin i received. What I can tell you is I am grateful to infinity and back that I am alive.

Anywho, we have a whole month to yackity schmack. I worked the last few days, niece & nephew combo since Friday so today is now officially DILLIGAF day.

Sep. 18th, 2014 | 11:45 pm

If either of my "hunters" happen to be reading this, don't begin to think that it's all about either of you. This last month has pretty much sucked for me when it comes to having any one "interested" in me.

Pretty much right now, I think of all four of you who blew me off as boys. Frankly I've been there and done that with a few "boytoys" and while it was fun at first then the novelty wears thin. It's hard to contemplate any type of future with someone who has never had to be a responsible adult.

One thing I'd really like to know is "why" and I know I may as well ask the sun why it's so bright as I'm not likely to get an answer. The only reasonable explanation I can come up with is fear.

I will be the first to admit that I am scared witless about getting involved with anyone again. Yet I don't let that fear stop me from exploring the possibility that it will actually be a good thing this time around.

We can't let past fears get in the way of what the future may hold. Were I let to let past fears paralyze me then I wouldn't be doing all that I could to take control of my life back. I live with the daily knowledge that I likely will have another stroke and that brain surgery also has a good chance of happening again. I do my best to not let it get to me for living in fear of the unknown really doesn't do any good. Hells I may get lucky and never have another issue while I am still allowed to exist.

I also for damn sure wouldn't be willing to risk my heart again as it's been played and broken so many times. Yet I still hold on to the tiniest fraction of hope that eventually someone will be brave enough to give me a chance.

I'm actually worth far more than diamonds to be honest. I have the advantage of being able to look at the world differently since my brain decided it needed some rewiring work. I wasn't sure at first just how much I liked the changes in my personality but after living with it for damn near six years now I have learned it's amazing.

I laugh more. I enjoy being a kid again for they really have the best outlook and it's sad that we lose that as adults. While I still have bad day for lets face it we all do, I still tend to now let little things be just that, little things. I am more relaxed. Where once I was negative and pessimistic, I am so much better about being positive and optimistic.

Do I always succeed? No however it's a huge turnaround from where I used to be at.

One of my greatest joys in life is to knit. My eldest got me started six months after my stroke for therapy. It helped as I'm not sure if all are aware that I did all of my rehabilitation myself. There was no professional help of any kind. Back to my point though. As I grow more confident in my skills I love to create things for others. Sometimes a particular yarn or even a pattern will catch my eye and when that happens I get pretty focused until it's done.

Sassmoe, I had a pattern for close to two years now and I've never been able to master the logistics of it until just recently. My inner knitting voice spoke and said give it another try. It's actually sitting right now about 2/3 complete as I ran out of yarn. It is being made for you and I do hope you'll accept it once I am done with it. I know you've been trying to get my kiddo to tell you what it is, hells I'll just show you a pic of it now.

This is actually a picture of my first attempt. I was not happy with the edges or the width of it and that all got taken apart and restarted.

I am sure you likely read far to much into me making you something. You're not the first person to get a knitted gift from me with no expectations of anything in return nor will you be the last. I've sent projects across the USA, into Canada and believe it or not the Czech Republic.

anywho, my thought train has skipped tracks, plus the puppies need to be fed and then I am off to bed as I've not been sleeping very well these past few weeks.